What should I do for my prostate obstruction and bladder retention problems?
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I’m trying to decide what, if anything, to do for my urinary retention and prostate problems. I’ve been self-catheterizing 4 times a day for the last 10 months after an ultrasound at my Urologist’s office identified urinary retention, which seems to be due to prostate obstruction. The post is a little lengthy, but I’ve had a lot going on lately.
My Urologist wants to remove my prostate for the obstruction and distended bladder problems, but I have a hard time accepting there aren’t better, less radical options. He said he would possibly consider urolift but didn’t recommend it, and there is also a local urologist who is supposedly one of the leading experts with the procedure I’m considering contacting. I don’t think anywhere nearby does PAE that I’m aware of (I live in Utah), and the same with FLA. I’m 54 and my situation is a little unique in that I’ve also been on Active Surveillance (AS) for prostate cancer for the past 8 years after my PSA doubled during a yearly physical. My Urologist considers everything based on the possibility of having to have the prostate removed one day due to cancer, which is why he doesn’t recommend a TURP. But one of the reasons I’m doing AS is to avoid a radical prostatectomy for as long as possible, maybe forever, and my last two biopsies have been negative (as part of doing AS I’ve also embraced an anti-cancer diet and lifestyle). I’ve had six total biopsies now, which I sometimes wonder is part of my prostate and retention problems, and there has never been more than one positive core or Gleason score more than 6.
The retention was discovered during a visit with my Urologist (and PSA test) in late November 2016, when they performed an ultrasound on my bladder and it measured about 800 ml full. I was shocked to say the least, it had probably been that way for quite a while and was gradually getting worse, but with the small changes over time I unfortunately didn’t realize what was happening and also thought some of my urination difficulties were due to my prostate issues. I wish they had been doing the ultrasounds in prior years so it may have been discovered earlier and saved so much stretching of the bladder. I had a urodynamics test a few weeks later and it measured a bladder water pressure of only 34 (not sure what units). After 8 months of self-catheterizing I had a second urodynamics test and the pressure was back up to 68, but not to the normal range of around 100 yet.
The second urodynamics test also indicated I had some type of blockage which is still making it hard to urinate even with the increased pressure. As I mentioned my urologist recommended performing a radical prostatectomy instead of a TURP because a TURP makes it too hard to do a prostatectomy if I ever needed one. He said based on my current bladder pressure there was an 80% to 90% chance I would eventually regain full bladder strength and normal urination after the operation. I asked him about some of the options like urolift and others and he said they all cause problems for surgery, for instance the impotence rate from a RP after a urolift is 50%. I also asked him if I could get the pressure back to 100% just doing the catheterizing and he said possibly, but couldn’t say how long it might take. All they know is the bladder needs to be kept emptied regularly to heal. I also asked him if the pressure got high enough again it could push through the obstruction, he said possibly.
In addition, when I had my appointment back in November 2016, my PSA had jumped up a few points which led to my latest biopsy in February 2017. Prior to the biopsy I had a specialized prostate MRI so my Urologist could do an MRI fusion biopsy. The MRI didn’t show anything significant and my Urologist commented he was “underwhelmed” by the results, but still performed the biopsy. It came back negative for the second time in a row, but did show acute, chronic non-bacterial prostatitis (for the first time). My Urologist prescribed finasteride, but I stopped after about 2 ½ months due to the terrible side effects (ED, mental fog, really messed up sleep and insomnia, etc.). I don’t know if the prostatitis is part of the retention problems, or was caused by the retention, but it sounds like there aren’t a lot of good solutions for curing it and I’m sure it isn’t helping.
After the second urodynamics test in early August, I took Rapaflow for two weeks from samples they provided me and it really helped the flow for the first time in many months, although I also started experiencing retro ejaculation. When I got a prescription after the samples ran out it is was for Flowmax (tamsulosin) instead of the Rapaflow since there wasn’t a generic version of it yet and it was too expensive for my provider to cover. The flow from the tamsulosin hasn’t been as strong, but it seems to be helping. The retro ejaculation from the Rapaflow has gone away though, which sounds different from a lot of the posts on this site. I’m still getting more out from catheter than naturally, but hope that will change at some point. I’m also taking stinging nettle root extract and pumpkin seed oil in hopes that it will help with the tamsulosin. I’ve been doing acupuncture and herbs too, not sure if it’s helping but I like to think it’s providing some benefit.
After doing some online research I requested a cystoscopy after the second urodynamics test to get a better idea of what’s causing my problems and had one about a week ago. Not sure why the Urologist hadn’t recommended one since they’re a pretty simple and quick procedure, I guess he’s made his recommendation and didn’t see a reason. It showed the prostate narrowing a little near the bladder, and from inside the bladder it showed the prostate pressing in some on the bladder neck which is likely the main cause of the blockage/retention. Not sure if is just anatomical, prostate growth with age, due to the prostatitis, prostate cancer or a combination of all of them, the PA did the procedure and I haven’t spoken with my Urologist about the results. The assistant did say it wasn’t an enlarged median lobe. It also showed some damage on the inside of the bladder from being over stretched. The rest of the prostate and urethra looked good. Pretty interesting watching it all on the video monitor, I just wish things looked better.
Quite the story, and it’s been a very strange and stressful year. I have another appointment with my Urologist after the first of the year, but still have no idea what to do and will continue looking at the other options. I’m even considering stem cell IV therapy, but most success stories (mostly for other types of conditions) seem anecdotal. An operation and its potential life long side effects aren’t my preference, but I don’t want to always have to catheterize either. Although if I could get to where I was only doing it once a day or less with no meds, I think I could live with that. I just want to pee and ejaculate like normal.
0 likes, 102 replies
cartoonman dbhumie1
Posted
iTind is currently also available in Canada. It's on my list of "maybes." Of course, as a Urolift veteran, I wasn't qualified to join the trial groups in this country. :-/
hank1953 cartoonman
Posted
hank1953 cartoonman
Posted
Hi cartoon, Some thing else that I am also interested and is currently in clinical trials is 'once a year injection for BPH':
sophiris bio bph injection : PRX302 (topsalysin)
Wish they would hurry up. Hank
kenneth1955 hank1953
Posted
Hey Hank. Just read some of the trail. They don't come right out and say that it does not cause retro but I do like what they put in one of the lines. They were talking about how some men are not happy with the side effects of the others procedure. This is what they said. There is a demand for better balance between efficacy, safety and quality of life. The treatment takes 4 minutes. This one I read ended in 2015 There is a new one that started June 8, 2017 for cancer. We will have to see what happens Ken
hank1953 kenneth1955
Posted
Hi Ken, we'll know more after the trial conclusions, I hope. Hank
hank1953 kenneth1955
Posted
Without any other serious side effects, I'd volunteer for that 'once a year injection' right away. Hank
kenneth1955 hank1953
Posted
pluff_mud dbhumie1
Posted
oldbuzzard pluff_mud
Posted
jimjames oldbuzzard
Posted
@OB: I did (self cathing) for 3 weeks after Rezum and would have been unhappy if I had to do it indefinitely.
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If I stopped self cathing after the first three weeks I would not be as kind as you. But soon thereafter my body adjusted, and like many it wasn't that long before it became a non issue in my life. The beauty about self cathing, as opposed to surgical interventions, is that it's totally reversible. If you don't like it, all you have to do is stop and you will be no worse for wear. But first you have to give it a try, and I would say three months is a more realistic trial than 3 weeks.
Jim
oldbuzzard jimjames
Posted
jimjames - my situation was different than yours in a couple of ways. FIrst, I only had one sort of semi retention issue over 4 years, so it wasn't a necessity and probably not even recommended - although I was glad I had that catheter in my bag on that business trip when I couldn't get empty at 2 AM.
Second, I never had much trouble getting used to the process, just didn't like always having to have catheters wherever I went and didn't want people to know. Grabbing one out of my locker at the gym, needing to find a stall at a bar/restaurant was the kind of stuff that I would have prefered not to deal with long term - but fortunately I never was faced with that. My guess is that you can learn to accommodate a lot of that with practice and ingenuity.
jimjames oldbuzzard
Posted
From what you said, sounds like three weeks was enough time for you to make an informed decision, but for many of us, including myself, it takes longer. I realize many scoff at my "as traumatic as brushing my teeth" analogy, but that's what it became. And if it became that for me, it can for many, as I had a bad first few weeks. Really bad.
Jim
oldbuzzard jimjames
Posted
No doubt for many its a good and viable elective option - you're a perfect example. And I was glad I had the option after Rezum. 3 weeks on a Foley would have been agony
pluff_mud oldbuzzard
Posted
I don't know what level of social and physical activity you refer to, but I find self cathing much better than having the sudden and frequent urge to urinate hit me while I am away from home. I cath when I get up in the morning, when I go to bed and twice during the day. I just returned from a 5 day trip. I have a kit I made up that I carry with me when I am away from home. I have compact catheters that I can put in a pocket when I want to be more discrete. I have no trouble cathing in airports, on the plane, in restaurants, etc.
?Each person has their preferences. I find cathing meets my needs without surgery. Hopefully, my distended bladder will recover normal function. However, until that occurs, I don't have to worry about finding a place to urinate when I am on a long walk or driving in the car.
cartoonman pluff_mud
Posted
HEAR, HEAR! I'm with pluff mud! SInce I took up CIC, I've traveled to France for my honeymoon (one month), California a couple of times, Colo and Utah a couple of times, back to France, England, Italy, Germany... Even using the regular SpeediCaths, I just roll 'em up and tuck into my pants pocket, or stick one down my pants if I'm heading right to a WC. My abbreviated prep system adds only 30 seconds to a natural session, and after three years of CIC, I hardly notice the extra time and prep.
kenneth1955 pluff_mud
Posted
Pluff Mud & Cartooman I applaud you both. You have found a way to live your life without being force into a procedure that may or may not work. I think it great. We do what we can to enjoy all we can Take care Ken
jimjames cartoonman
Posted
@cartoon I just roll 'em up and tuck into my pants pocket, or stick one down my pants if I'm heading right to a WC.
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Is that a catheter in your pocket or are you just glad to see me Alternatively, if you don't want to bend them (I do not recommend bending the Coude models) the Speedicaths can be tucked into your socks and covered by your pants, or simply just carry them in a back pack which is my preferred method.
Jim
oldbuzzard jimjames
Posted
Its good to know that one do regular CiC and live pretty normally and discretely. If I ever need to, I'll reach out for some pointers.
cartoonman jimjames
Posted
JimJames: HAH! And you know, the SpeediCath regulars are just fine with rolling up. I've never had a problem with that, although if it's been rolled for a while, I have to insert while considering the curve it picks up.
Ans yes, sliding 'em UP the pants leg and into the sock also passes muster.
zdzislaw cartoonman
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How do you manage not hurting your urethra? I feel hurt down there and not enthusiastic about sex...I wonder whether the pother CIC fellows don't have this problem?
zdzislaw jimjames
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jimjames zdzislaw
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Hi ZD,
Where exactly does it hurt? Is it during the cath process itself, or afterwards? The only times I ever felt sore was when I stopped cathing for a month or so and then started up. Other than that, no soreness.
Trying a different catheter might make sense. Because of its telescoping design, the Compact is actually quite wide at the top (18F) before it tapers down to 12F at the tip. Compare that to the regular Speedicath I use that is 12F from top to tip. That's a major difference. I also found the Compact a bit rigid compared to the regular Speedicath, and again this was probably due to the telescoping design. I'm not trying to put down the Compact, and I'll admit its very convenient, but if your urethra is getting sore from it, then it's time to experiment with a different design to see if that makes any difference. You will also find the regular Speedicaths around 2" longer, which I find helps with insertion. With the Compact, I found that the funnel was right against the meatus.
Jim
jimjames
Posted
ZD, You also might want to try the new Speedicath FLEX Coude. The material feels much softer than either the Compact or regular Speedicath. I prefer the regular, but some have said the FLEX works better for them. It's also designed to fit into your pocket like the Compact, so you will still have the convenience factor.
Jim
pluff_mud jimjames
Posted
pluff_mud zdzislaw
Posted
I have been cathing for over 3 months, and I haven't experienced any soreness in my uretha. I use a latex catheter and plenty of lube.